biomedical and healthCAre Data Discovery Index Ecosystem · biomedical and healthCAre Data Discovery Index Ecosystem Lucila Ohno-Machado University of California San Diego Research
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biomedical and healthCAre Data Discovery Index Ecosystem
Lucila Ohno-Machado
University of California San Diego Research Data Alliance, San Diego
BoF Biomedical Data 3/10/15
Core Team
v U Michigan w George Alter
v U Oxford w Susanna Assunta-Sansone
v U California San Diego w Maryann Martone
v U Texas Houston w Hua Xu
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v NIH w Ian Fore w Jennie Larkin w Dawei Lin w Ron Margolis w Julia Puzak w Heidi Sofia w Alison Yao
Aims
1. Help users find accessible data
2. Assist data producers on how to publish data for maximal discoverability
3. Build a prototype to dock pilot products
PubMed of Data = DataMed
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Medicine in the Era of Big Data
v Biomedical science is moving towards data-driven approaches w 60+ genetic variants are
adopted in clinical practice
w Sequencing is getting cheaper
w Family history data is consider as "the best genetic test available”
slide from Dr. Xiaoqian Jiang
Types of (Big) Data
v Genomes v Transcriptomes v Proteomes v Metabolomes v Microbiomes
v Images v Physiologic signals
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v Electronic Health Record
v Claims data v Patient-reported
data w Mobile health
sensors v Environment
w GPS w Air quality
Short-Term Goals
v Develop a functioning prototype of a DDI v Serve as a community hub, incubator and
clearinghouse for examining issues, developing and testing innovative strategies, and establishing appropriate partnerships for creating a DDI
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What about privacy?
v Imagine a public data set of genomes about a certain disease (e.g., Alzheimer’s)
v Can you find out if your neighbor has Alzheimer’s?
v Same problem happens with clinical data, which can be re-identified to a target patient w Dates of visits w Combination of patient characteristics
Health Insurance Portability & Accountability Act
v Security w Risk of disclosure w Liability
v Privacy w Risk of re-identification w Informed consent
v Presidential Commission for the Study of Bioethical Issues w Privacy and progress in whole genome sequencing.
http://www.bioethics.gov covers genome sequencing, exome sequencing, genome-wide SNV analysis, and data from large scale genomic studies
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HIPAA ‘De-identified’ data • removal of 18 identifiers, such as
dates, biometrics, names, etc. • expert certification of low risk of
re-identification • ‘Limited data sets’ have dates +
‘de-identified’ data
Biometrics and PHI
PHI requires HIPAA
• Biometrics require HIPAA
Biometrics are Protected Health Informa7on (PHI)
Genomes are Biometrics
PHI requires HIPAA
• Biometrics require HIPAA
Biometrics are Protected Health Informa7on (PHI)
In 2.5 years we will have
v A free, user-friendly means for users to locate data sets of interest w NIH-funded projects (BD2k Centers of
Excellence, Administrative Supplements) w Essential Repositories
v Standardized, searchable information (meta-data) about the contents of a data set w Built from existing meta-data in repositories and
indices w Include meta-data about accessibility of the
data
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Data Discovery Index
v Engage end users v Leverage existing efforts v Operate in the ‘NIH commons’ v Will deliver a prototype v We expect NIH to incorporate the DDI
v Funded by NIH U24AI117966
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